A Work in Progress.

I won’t ignore the other parts of my life, but please- one thing at a time.

You see, I’m still in progress. I’m still working on healing wounds and processing the past. I’m still trying to improve where I see room for growth. I’m still trying to figure things out. Most of these things are very internal and not something you can necessarily see or measure with a finger stick.

You see, I have a long way to go, but I’ve also come a long way.

My expectations of myself are that I should have fixed and dealt with everything by now. But it’s not quick and some things come back in waves triggered by a reminder that can be as swift and quick as the wind, but leaves you picking up pieces you thought you already put away.

I still don’t know what I’m doing, and I’m still working on things from my past.

I’m still in progress, but I can’t and won’t say wait.

I’m still in progress, but I’ll go at my own pace. And try to remind myself how far I have come and that I can’t fix everything with the snap of my fingers. Especially if I want to do it right.

When I sit in your office, I want you to know I’m still a work in progress. That I am a person first.It isn’t just a number. It isn’t just a diagnosis. It isn’t just my past. It’s who I am today (but I know the former plays a role).

I want someone in mental health who understands Type 1 Diabetes, but a Diabetes care team who also gets mental health. Then I want all the other medical professionals to understand it as well– but one can only wish. I want to have a conversation about my health, because I live in my life everyday and you only see a glimpse for maybe 30 minutes to an hour. I won’t be talked at.

I’m still in progress when it comes to Diabetes, but also navigating ADHD and Anxiety. I share that information with you because they all interact in my life.

I get a nod of approval for a lowered A1C or the fact that I upload my CGM every week. But. When I share that I’ve finally stopped checking my blood sugar every 20 minutes if my blood sugar is above target and that I feel better about how I relate to my CGM (well getting better at that)… and I get nothing- it definitely stings.

You immediately start talking about the fact that I must always over-correct lows and highs- (it’s just the highs) and you were only referencing 2 days of data. I say, I’m working on that- I know I tend to rage-bolus, but I can feel I’m not rage-bolusing as often now. I’ve been working on that part of my OCD. But apparently, I should have already fixed that.

I also shouldn’t have forgotten to switch from my weekend pattern to my weekday pattern- maybe I don’t need patterns. I simply… just forgot- and that was the first time I forgot. I’m only human.

We don’t really talk about the Diabetes and mental health correlation. You tell me I need to see the mental health person in your office, but I already see someone for my prescription for my ADHD medications. Do I really need to see a second person on top of that? Why can’t we talk about it- even if it is for just a moment?

I don’t want to be talked at- I want to be a part of the conversation. Which I’m sure, isn’t factored into my appointment time. I tend to believe that as a teen and even a young adult, we aren’t taken seriously in a lot of situations- like at the doctor.

I don’t necessarily want to look forward to my doctor appointments (but that would be nice), but I don’t want to dread them either. I don’t expect a party or anything, but I would like a little recognition for my effort and to take steps to continue to improve my care.

I didn’t appreciate being called a “hard stick” by everyone in the office I came into contact with, repeatedly. I made sure to tell them my veins are hard to find… I asked for someone who has been doing this for a while. I was questioned about why I needed a butterfly needle.

During all of this, I’m trying to compose myself after getting “poked” twice and having a lot of fishing around- and nothing was found- so no blood work was drawn and they comment on that too. I have an ironic fear of needles- especially when it is someone else doing the poking.

I don’t like to look at my form to schedule an appointment and see “for uncontrolled type one diabetes not meeting goals.” We didn’t even talk about my goals, or your goals, or our goals.

I don’t like talking about numbers and care in this sense- but my a1c is in the range that basically everyone recommends. (Yes- I do have some lows, but I feel them and immediately correct- I don’t pass out or have seizures). I check my blood sugars and ketones when appropriate. I make changes when I notice patterns. I use all of the features technology offers me. I do everything that I am supposed to do (and so on).

So, what is “controlled” then. Is it a perfect line in the CGM- with only a very small window? With no lows or highs and a steady straight perfect line. What is control? I’m curious.

What about the thing called human error. What about the thing called life. Language matters and “uncontrolled type one diabetes” and “hard prick” were floating around my head all day that day. I felt defeated at the end of my appointment. I didn’t feel good enough. I have perfectionist tendencies all on my own, and I’m not a fan of the pressure to be perfect from outside sources too. I do that just fine on my own.

and after talking about my rough endo appointment with people in my life- I felt better- then I had my appointment for my ADHD prescription this morning- and it all came flooding back. I felt comfortable with the person I saw in general but also about the type one diabetes. I didn’t feel like I had to explain or educate- so I was appreciative of that. But of course, we go into “history.” I expect this. but then he gets caught up in resiliency and my past- which yes- I know plays a role- but where were these questions and comments when I could have really benefited from them?

I can’t financially afford to experiment with other medications right now. I also don’t really want to either… I was already nervous to go on anything, and this is working for me. I’m sure he wants to find the magic thing… but I also don’t want to run out of medication either. I felt defensive when I didn’t leave with a prescription and was asked to schedule another appointment. It wasn’t a bad experience, but my endo appointment from the week before came flooding back to me.

I’m still a work in progress. I still have a ways to go. I think there will always be room for progress, right? I want room to grow and guidience along the way. But I want you to agree that I am working on things- and sometimes- the center of my universe isn’t Diabetes- which I know can be a shocker.

I’ve done the transition of care four times now- I hope to not do it again. Sometimes, I feel prepared for the real world (as much as a 22 year old can), and sometimes I feel like I have no idea what I’m doing.

16 thoughts on “A Work in Progress.”

Hugs! You are wise beyond your years, and you’re right- those phrases shouldn’t be thrown around like that. I often say that if diabetes clinics took a few moments to get the “waiting room perspective” (ie the patient perspective), they could find simple ways to change for the better that were right under their noses all along. And when in doubt, a weekend retreat to get the staff refocused on treating patients with dignity and respect wouldn’t hurt.

Wow this is exactly how I feel. Everything you have written I completely agree with. Mental health for Type 1 diabetics is really important and needs to be discussed more. I have recently started a campaign that is trying to bring awareness of mental health for Type 1 Diabetics check it out. https://t1dcampaign.wordpress.com. Keep up the great work.

Coming of Age with Chronic Illness and Mental Health

Disclaimer

I do not have any kind of medical degree (science and math are not my thing). My views are also my own and do not reflect where I work or any groups I am involved in. This is not medical or psycho-social advice. Please consult your doctor. Everyone also has different stories. experiences, and views. Please respect those- including mine.
Thanks!- Mindy Bartleson